#i want a fibro diagnosis so i can actually get some help for the things that make life so hard to live. | Explore Tumblr Posts and Blogs

sybilhallward · 10 months

Note

if you have chronic pain you're disabled

Hi anon. You sent this ask in March, after I'd written in the tags of a post that I didn't know if I was allowed to call myself disabled because of my fibromyalgia. I remember this vividly, because I've been thinking about it ever since. My biggest struggle with fibro has always been allowing myself to recognize I have specific needs and justifications for some of my "deficiencies", and this was no different: how could I call myself disabled when there's people who are missing limbs or cannot move? I must just be lazy and entitled! Thing is, despite having full control over a technically perfectly functioning body, I don't have the same options as abled people in my day to day life: my neck moves, but 80% of the time it hurts; my legs work, but if I stand up still for more than an hour I need to sit for the next three and nothing really helps my muscles relax; I can live my life fairly normally, but for a couple of days every month I need to take 2-3 naps because I cannot otherwise keep my eyes open; my hands work, but they start hurting so easily that I've never been able to actually build up their strength. This, specifically, has impacted my life pretty drastically: I've stopped playing the violin partly because at first I couldn't stretch my pinky in the correct position on the fingerboard, and then even holding the instrument up became painful. I've stopped playing tennis because my wrist screamed with every impact. My biggest joy in life has always been writing, but for the last few years I've barely done it... there's a variety of reasons, but chief amongst them is the fact that nowadays I can only hold a pen for about 20 minutes before my hand gets enveloped in white-hot flame, and using a computer took most of writing's magic away, for me. These last few days I've realised I might never again play an instrument unless I allow myself to be extremely patient with my limits, and that singing is really the only way i can painlessly make music. These thoughts are sort of breaking me at the moment. Of course, I don't want to feel and present myself only as a victim for my whole life, but the first step in taking control of my life and trying is realizing I won't have as easy a time as able-bodied people: when I got my diagnosis I had been avoiding all sports except swimming for years, because I thought I was just bad and whiny when trying anything else. After realizing I had a real problem, though, I started doing pilates to slowly build up my strength and now I can do things I thought I could never do! I can walk long distances, carry some weights, play table tennis and table soccer with friends at parties... My life is so much better now that I recognize and accomodate for my limitations! So... yeah. I am disabled. Less than some individuals in this world, but also much more than some other. And that's not bad. Thank you, anon. Happy disability pride month!

#vane blogging #chronic pain #chronic illness #fibromyalgia #chronic fatigue #spoonie #disability pride month #disability month #disability #disability pride

85 notes · View notes

seraphim-soulmate · 3 months

Text

I needed to send another email to a government program and when checking if I'd attached the proper documents, started crying pretty hard because I didn't fully realize what I'd been sending these people. I fully read the documents that I've just been sending as proof of my disability and it tore me apart while building me back up.

One document is a testament to every treatment I tried, written by the pain clinic, with all the results of every treatment. Every consult I went to, another update about what I'd been trying. it's not absolutely everything either, bcs there were months that I didn't go to the pain clinic so they didn't get an update. I did SO much and fought SO hard to get myself help, to try to feel better. And it's all there, in that document. And I'd gaslight myself into thinking my problems weren't that bad, that I was being excessive or making things up. That I didn't have a right to articulate my needs and get them met, that I wasn't even allowed to have needs. I had to work, actually work on, in therapy, finding out my most basic needs. Then communicating them. Without dismissing myself or belittling myself or thinking I'm bad or my needs are bad if someone cannot meet them. Now I have to work on communicating them in a way that doesn't sound like an order, and communicating them early enough that I don't feel a need to articulate them like an order.

There's also of course my psychiatrist's letter which is hard-hitting too. The fact that I helped write the rough draft only makes it even more painful, but in a good way. The last sentence, after pages of my diagnoses and how they impact me, is "despite his many problems, he presents a beautiful resilience associated with a strong desire to improve his life conditions and to better integrate into society." When you've just read the medical report from the pain clinic, then the one from the psychiatrist, I don't know who wouldn't be shaking in tears after that tbh. Especially with the knowledge of where I was at in life, that I was caretaking for my grandmother the entire time that I was struggling myself, and that I was alone. I had friends, and I cannot be more grateful for those who stood by me, but not having family is hard. Knowing your parents don't understand and can't help is hard. I'm glad my dad tried, that he's gotten better at believing me again. He was the one who actually came to me with the idea that it might be fibro, but that was such a scary diagnosis at the time, for the fact that it was psychosomatic and for the fact that there was no relief, that it took me a bit to accept that he was trying to help. And then I looked into it more. And I went to the pain clinic. And I got so so so very lucky making an appointment, I got one for the following week because of a cancellation. I would have had to wait months otherwise.

Knowing I did that, by myself, alone. I researched conditions and symptoms and medications and treatments and therapies and the list goes on! I became a micro-expert in my field of disability, because you have to if you want to know what your doctors are doing to you and what you can do in response. Advocating for yourself as a disabled person and fighting with doctors is one of the most fucked up things I got from this experience. Some of them are absolutely repugnant.

I searched for all the medical professionals, I reached out to them, I booked the appointments, I reached out to get help going to the appointments so I would have a witness to how doctors treated me, I tried again and again and again, despite so many treatments failing or even worsening my pain. It's so weird to look back on that and think that I didn't just do nothing about my condition, that I was more active and engaged in my care than most disabled people are (or can be, no diss to disabled ppl who cannot get access to care).

I'm proud of that, of everything I've done, but it's also deeply fucking sad. I did that all alone. I didn't get a diagnosis when I was younger, I didn't have the support of my parents. My mom didn't book doctors appointments for me, she didn't take me to them, she didn't hold me when I was weeping with pain and grief and loss. She's proud of me, for everything I've accomplished, because she's now seen people with my conditions who struggle more than I do and she realizes now how excruciating it is for me to be here- to exist. Realistically I know it was easier for me to do it without her, she lives in the middle of nowhere and would have been more of a burden than help, but it's still hard. It's hard that I cannot count on my parents for this, to literally take care of me. Idk if it'll ever not be hard, if I'll ever forgive them for not listening to me all those years I cried out for help to be met with silence, or worse, accusations of lying. Of making it up for attention.

But I'm a success story. I'm living, breathing, being human, being loved and loving, and dealing with it all as it comes. I get to wake up another day and see how the sun reflects off the leaves, I get to see another sunset, I get to see the snow, I get to go to the park, I get to craft, to create, to play. I get to be part of other people's stories. I get to discover my own story.

#personal #me #disability #chronic pain

7 notes · View notes

crippleprophet · 2 years

Note

hiii!! i was wondering if u have any advice on getting taken seriously and getting care in an emergency department as a chronically ill/disabled person?

i've had progressive muscle weakness, fatigue, nerve issues, and pain for like five years that hasn't been properly diagnosed (been told it was fibro but. doesn't seem to fully fit that anymore. idk if anything will show up on tests but even if it doesn't i feel like the more correct diagnosis would be ME. my current gp thinks i have [seronegative] myasthenia gravis but gps can't order emgs so can't diagnose it), and recently have been having trouble breathing that seems like it's due to muscle weakness in my chest and follows the same patterns as my other muscle weakness.

my gp can't do anything to help (and referrals always get declined because the system is overwhelmed) and can only advise that i go to the hospital, been to one hospital who sent me home because my oxygen saturation was fine (even though from what i've read shortness of breath caused by muscle weakness doesn't show in oxygen saturation til it's Very Very bad, at the time i could only speak a couple syllables per breath and my peak flow was around half of what it usually is), i asked my gp what to do and he told me to try the further away hospital and explain that i haven't been able to get care at the closer one.

my mum is going to take me in a couple days (unless i really can't breath in the mean time obviously) and i'm nervous because i usually get dismissed, or they'll do a couple tests but not the ones that would actually show the conditions that i might actually have. i don't know how to advocate for myself without getting seen as overreacting, or get care for a chronic condition that has become urgent because usually if it's been happening for a while they'll say to just talk to ur gp but. my gp can't do anything.

(note: i know ur only supposed to go to the emergency room for things that are really urgent and the fact that i'm waiting a couple days might make it not urgent. my gp has said this is the best thing i can do though because there's literally no other avenue for me to get care and with my breathing the way it is i am even more restricted in what i can do than i have been before.)

oh god, i’m so sorry you’re in this position and am sending so much love to you. obligatory disclaimer that i’m not a medical professional, just Some Guy with a couple degrees, a girlfriend in medical school, and a whole lot of medical trauma.

that being said, my only advice is to lie. lie your ass off, lie like your life depends on it, most importantly lie in an informed fashion - which is easy in this case because you pretty much know what you have, you just need them to do the test you want. the doctor thinks they’re creating a clinical picture on a blank canvas and you need to give them a paint-by-numbers.

here are the factors i would consider and the narrative i would construct if i was in your position, but it’s your body, your experiences, and your care (or lack thereof), so all of this is just my opinion and your mileage absolutely may vary:

most importantly, make sure anyone with you in the ER is on the same page. a lot of doctors assume patients are lying by default because they suck, so if somebody contradicts you, you’re probably screwed. when my gf takes me to a doctor’s appointment, we have a “what are we lying to them about” meeting ahead of time. you know your mum best, so you probably know what approaches she would/wouldn’t be on board with, but i’d initiate that conversation like “i’m concerned this hospital might dismiss me like the other one did, so i’m planning to say XYZ to hopefully get them to take me more seriously” and not “Some Guy on tumblr told me to lie my ass off” lol

next, make your symptoms match the textbook. downside to this, i definitely recommend not bringing up ME/CFS because they can’t/won’t test for or treat it (i have a friend in the UK who almost certainly has ME/CFS and just got sent to even more physical therapy). here’s where it helps that your GP is pretty sure they know what you’ve got (whether you actually have that or not): research myasthenia gravis (i recommend continuing education sites geared towards clinicians), know what’s on that list, and (with some exceptions) say you have those symptoms. my personal strategy is three-tiered:

lies of creation: unless it’s something immediately life-threatening or something they can concretely disprove, say you have symptoms of your disease even if you don’t. ER doctors don’t give a shit if they can say you need to wait it out and go to a specialist, regardless of that being unrealistic and your symptoms being unlivable, so you need something urgent and serious. (my gf says “they might be worried if you’re having trouble swallowing. maybe.”) myasthenia gravis typically waxes and wanes, so even if you’re able to do something when they examine you, it would be totally realistic for you to not have been able to a couple of hours ago (eg, when you arrived to the ER). for example, i told the NHS i totally had a positive MRI in the US that i was having delays getting access to the records of, even though my MRI didn’t show a speck of inflammation, because at least that got me a couple months of flare medication while they confirmed and an NSAID when they decided i was in remission rather than literally nothing. obviously you can’t tell them you’re seropositive because they’ve unfortunately got that record, which means you’re already fighting an uphill battle, which leads to my favorite sub-category lie of creation: anything you’ve read or believe or know that works in your favor, your GP told you. memorize what percent of people with myasthenia gravis are seronegative - don’t lead with that, because doctors hate when people are educated about our conditions or know what’s wrong with us, but if they say “we won’t do an EMG because you can’t have myasthenia gravis because of your bloodwork,” then you can be like, “my GP said that’s pretty common, like, about X% of people don’t show up on the test, and they’re really convinced i have this.”

lies of exaggeration: increase frequency of symptoms, impact on your activities of daily living, rank on a scale. familiarize yourself with what the numbers on the pain scale generally mean in terms of ability, and elaborate - “my pain is at an 8, it’s really hard to XYZ.”

lies of omission: this ER doctor was an asshole and still would’ve fucked me over regardless, but the instant i said “yes” when he asked if i experienced acid reflux, he stopped listening to a single word i said. i was experiencing acid reflux, and i knew that symptom happened with IBD, celiac, and a host of other serious conditions, but he instantly decided that was all that was going on with me, tried to send me home with just an antacid during the worst pain of my life, and led to me experiencing malnutrition and all my hair falling out due to the severe delays in accessing care. my recommendation for “instant dismissal” (or worse, “instant institutionalization”) symptoms to omit are: acid reflux; menstrual cramps or really anything related to menstruation; anything they could dismiss as covid - if they try to dismiss your breathing issues as covid, say you’ve tested negative this week even if you haven’t had a test. if you’ve had covid and you’re certain it’s not in your chart (assume it’s in your chart if you’ve ever said it to a doctor), say you’ve never had covid. if they still try to say it’s covid, stress that this has been going on for years before covid; anything psychiatric.

so, what i would do:

“i have X, Y, and Z symptoms. my GP thinks i have myasthenia gravis and is working on referring me, and said to go to A&E if A, B, or C got worse. A, B, and C have [measurably gotten significantly worse since the last time you went to A&E] - i’m having trouble breathing, swallowing, and [other].” hope that they decide to do an EMG on their own.

if they try to send you home or try to do useless tests, say “my GP mentioned that i really need an EMG in order to get the treatment that would help me be able to breathe, swallow, [other]. will this test also do that?” (one of the instances where you strategically ‘play dumb’ because doctors hate when we know things)

if they still won’t do anything helpful, either you or your mum say: “i’ve/they’ve had these symptoms for five years and it’s never been remotely this bad. i/they seriously can’t breathe, swallow, [other] - how do we manage these symptoms before we can get to a specialist?” i’m white and, having been super professional/polite until then, this is the point where i start crying; you know your circumstances best and whether that will incur racism, etc, upon you from the medical system.

if they still want to send you home, i (again, being white) would at that point firmly request a second opinion. they still might send you home with nothing; i did all of this shit and received 50 pills of 50mg tramadol in addition to the antacid, and probably an angry note in my file, and not a millisecond of further testing.

i say this with love and from experience, in the interest of minimizing trauma and devastation: you need, to the best of your ability, to go to the emergency department with the expectation of receiving no care. i recommend a buddy, a reminder, and a reward: message a bitter crip or someone else who Gets It throughout the process and have support in place for if/when you get home with new medical neglect and trauma; remind yourself that your symptoms are real and serious and, in my gf’s words, “if your GP thinks you have myasthenia gravis, you almost definitely have something neuromuscular going on.” i like to make posters of my reminders (example here: link); do something that will make you feel better afterwards - my go-to is buying a new stuffed animal after experiencing medical trauma. i have a lot of them lol

for more advice on coping with medical neglect before and after appointments/visits, see my post here (link). if you don’t know anyone who’ll understand or be available and helpful to support you during your trip to A&E, feel free to dm me and i’d be happy to give you my WhatsApp. i wish you so much luck and you’ll be in my thoughts, i really hope it goes as well as possible - you deserve quality, compassionate, thorough care. if you’re comfortable with doing so and feeling up for it i’d really value an update afterwards 💓💓💓

#doctor hate blog ✌️🖤#faq #hospital talk #asks

88 notes · View notes

unfinshedsentec · 2 years

Note

Hello! I was wondering if you could do a headcanon of tr boys helping the reader when their fibromyalgia flares up. If possible I'd request rindou,ran,inui and koko! Have a nice day❤❤

Hey love! Thank you so so much for requesting! I actually got. another request very, very similar to this so I kinda mixed this with the other one. Also, I don’t have Fibromyalgia, BUT I did do some research on it, so I hope I captures it well!

I really hope you enjoy <3

WHEN THEY HAVE AN S/O WITH FIBROMYALGIA

reader is gender neutral!

characters: Inui, Koko, rindou, and ran!

tw: umm possibly curing and mentions of pain (I guess)?

-INUI

Fibromyalgia was something you only began dealing with fairly recently. It’s not something that will kill you, but it certainly makes life harder. And it DEFINITELY made your life much harder.

You have your good days and bad days.

Some days, you feel like a person again! Other days, you feel like you practically have the flu. Your entire body feels like it's bruised, you’re tired, sweating, feverish, cloudy, achy, and most of all, just in pain.

It's an indescribable type of pain, one no one but someone with Fibromyalgia will understand.

Unfortunately, that pain has truly made things worse for you. Thankfully, Inui's been there by your side through it all.

From the moment you got the diagnosis and through every single bad day, Inui has been there. He's helped you through all the pain and lack of sleep, no matter how grumpy you get. He makes you smile through your bad days, which is something you especially need in those days.

He's truly your knight in shining armor, although he doesn't realize it. Unfortunately, more often than not, you're in pain. And each time you are, Inui's right there your side helping you.

The moment you tell him you're now feeling so hot, he's immediately ready to help. He's getting heating pads out and running your warm baths. He'll make you ginger tea and makes you spray bottles of diluted Epsom salt so you can spray it on painful areas. Some days if you feel like it, Inui will exercise and pace with you to help ease the pain. And if all you want is a little nap, Inui would be right there next to you, pulling you into his chest cuddling you.

Hell, the man would literally bend over backwards to help you.

He's quite literally been the thing keeping you sane, so much so that you wouldn't know where you'd be without him. And although Inui maybe be quite straight faced through it all, the moment you get up and start to feel like yourself again, he'll be so happy he'd want to jump up and down.

Unfortunately, Inui would totally end up getting Firbo too (after all the trauma, and fighting, and lifting he does with the bike shop) so, you two would have to help each other to the best of your abilities! At least you understand each other pain, and you know exactly what can help!

Fibro might have caused you and Inui a lot of pain, and a lot of hell, but with each others help, it doesn't stand a chance at knocking you two down!

You and Inui would kick Fibro's ass, together!

-KOKO

The moment you began dealing with Fibromyalgia, Koko sent you to literally the best, most expensive doctor he knew.

He could tell immediately something was deeply wrong from the get-go. You were pale, clearly in lots of pain, having trouble sleeping, and just having a terrible time. The black-haired man was already extremely worried about you, but it was when you told him your pain was so bad it was in your bones that he flipped the hell out and immediately got you in with a famous doctor, only to get the horrible diagnosis of Fibromyalgia.

It was quite the diagnosis, and not what you expected, but you knew you'd be okay. After all, Koko would be there with you through all, and he'd for sure do everything in his power to take care of you!

And he did.

Within minutes of getting the diagnosis, Koko was doing all the research and getting all the stuff you could possibly need. Sure, he doesn't really like to spend a whole lot of money at once, but your happiness and health was at risk. Of course, he'd splurge on you!

He would quite literally get anything that would help you. And, although he's not exactly the best caretaker, he would most definitely do what he can for you.

Anything you ask, he'll do. Whether that's pain meds, a bath, or even something you'd like to eat, he'll get. He'll glad run you a warm bath and get an electric blanked out and turned on for when you get back. If you want a nap, he's right there next to you, running his finger through your hair, trying to help you sleep. Hell, if you're into essential oils as a pain relief, he'll get you all the oils you need.

Of course, he quite understand Fibromyalgia, but he does try his best.

Koko really is a great boyfriend, and he'll do everything and anything to help with your Fibro. And you couldn't be more grateful <3

-RINDOU

Out of all the people here, Rindou would probably be the most knowledgeable about something like Fibromyalgia.

The man is the type to just randomly read up on stuff like this, so he already knew what Fibro is, what symptoms came with it, and what can be done to ease it.

Hell, the man knew things even you didn't know, which, was a blessing.

On the days where you'd particularly be struggling with Fibro, Rindou would not only be super attentive to you, but he'd recommend stuff for you to try to ease the symptoms! Seriously, he recommended stuff you'd never even thought of. And when he found out you, his live, had Fibro, he did even more research!

He literally would find all the best methods, and all the things he could do to help you. He would buy the most expensive electric blankets and heating pads, and of course, if you’re in pain he’ll be right there by your side the WHOLE time (unless he’s in jail).

The man is a life saver, and if it weren't for him, you wouldn't be anywhere near as happy as you are.

He truly is the love of your life.

-RAN

I’m gonna be honest here, before you, Ran had never heard of Fibromyalgia.

I mean, he doesn't have it and he doesn't know anyone who has it, so he pretty much knew nothing about it.

Then he met you, who does have Fibro.

At first, he didn't even know you had Fibro since you never brought it up. You had yet to have a bad day around him, and you didn’t want to scare him, so you just sort’ve kept in on the down low. But, when the pain got too much, you desperately called him over asking him for help, and everything changed.

Without a moments hesitation, Ran rushed over to help you. He wasn't sure what was wrong with you or why, but he knew you needed his help. And he be damned if he didn't do anything.

Within minutes Ran would be at your house, and by your side. Of course, he still had no idea what was going on, but from the look on your face alone, he knew you were in pain.

“Ran, could you run a bath for me please? It might help my Fibro" you'd say. Ran was still very confused and he pretty much had no idea what you were going about, but he did what you asked anyway.

Really, anything you asked for Ran would do. If he needed to buy something, he would. And trust me, if he does have to go out and grab something for you, he'll come home with a HUGE bouquet of flowers and tons of stuff you love to put a smile in your face. Even better, he did this no questions asked.

He only asked questions when he knew you were well enough to answer them. And when Ran did finally did learn about you having Fibromyalgia, and he knew you'd just have days like this, he went out of his way to make these days better.

He pulled out all the stops for you. Electric blankets, heating pads, essential oils, epsom salt, really anything you needed he’d get you in a heartbeat. And if all you needed was him, you better bet his ass would drop everything to be there

Ran Haitani truly is your life savior. And he is, by far, the best boyfriend you've ever had~

masterlist || reblogs are very appreciated <3

111 notes · View notes

transboysokka · 17 days

Note

Hey, I totally understand you might not want to answer this so please don’t feel pressured to! But I was wondering how you found out you have fibromyalgia? Is it something you’ve known since you were a child, or did you recognise the symptoms later in life and go to a doctor? I’m asking because I think I might have some sort of condition, if not fibro then maybe some kind of arthritis. I get a lot of the symptoms, but I don’t know if it’s just a normal amount. I do get joint pain, and even though it gets worse sometimes, most of the time it’s not unbearable. And also other symptoms like fatigue and brain fog etc, but they could be linked to a lot of things in my life. Obviously I know you can’t diagnose me or anything over an ask, but do you have any advice on how to tell what level of pain is more than expected for someone without a condition? Like I said at the start, please don’t feel like you need to answer this, feel free to ignore/delete it.

Honestly other people who have it talking about it clued me in a lot. I really don’t know how long I’ve had it but it got really bad and unbearable for me after a pretty bad head injury I had last fall. That’s a big way it can get started theoretically (nobody really knows anything about this for sure) and hoooo boy did it for me. So I’ve really only been actively aware of this for I’d say 4ish months? When I think back though I’ve had most of these symptoms for years, like since college

So a lot of googling around and talking to the right people and doctors (though I still have to get my ass up to a specialist for a ✨formal✨ diagnosis despite being p much confirmed already but I’m like literally why I have doctor anxiety and half of doctors think it’s fake and there’s nothing to be done about it anyway rip, the medical system in this country isn’t uh the best for that kind of shit) bada bing bada boom there we go

Some tips maybe I guess

If you are always/often in pain that’s not normal. It seems obvious but I had to actually have someone tell me that after putting up with it for so long. Also if you have fibro/chronic pain you’re likely to have a higher pain tolerance than others, for clear reasons

If a doctor tells you you don’t have it then maybe you don’t but also so many of them like don’t believe in fibro so I’d always get a second opinion

Track/pay attention to symptoms and when/how they get better or worse. A lot of times fibro pain gets better with exercise so you can differentiate it from like. Injuries or being out of shape. Also for me I’m always gonna have more pain after eating a lot of sugar.

Also fibro pain often affects muscles vs joints and isn’t necessarily limited to like one body part. For me I have several places it likes to be and it kind of just moves around. Also there are some areas more commonly affected than others

A lot of info can be found by googling! Symptoms and treatment!

A lot of symptoms for me are just stuff I’ve learned to live with but I often have “normal” days just from paying attention to diet, exercise (cycling), and taking glucosamine daily. I also have some mobility aids for days I need them but the more I exercise the less often that is

Obviously doctors can suck, but it’s definitely useful to get an opinion if you have the option

I hope any of this random rambling is helpful!!

#quesTian #fibro

2 notes · View notes

ghostlyfleur · 6 months

Note

hi angel! this might be a weird question and in absolutely no way do you have to answer if if you don’t want to, but I’ve heard you talk about fibromyalgia on here before and I was just wondering what are your main symptoms? and how did you find out you had it? I’ve been having health problems for a while now and I’ve been to the doctor about it, he said it could be fibro or it could be more to do with my mental health. it’s hard because I’ve read online that there are so many symptoms of fibro which makes it really difficult to know if I have it or not! obviously the doctor is the expert but I’d really like to hear from someone who actually experiences it! again, you don’t have to answer this if you don’t want to, there’s absolutely no pressure! thank you, have a lovely day/night! xx

hi love!

it’s not weird at all, i’m always open to talking about it.

okay, listen, i first started having symptoms back in 2017 when i turned 19 — excruciating leg pains whenever i went outside and walked somewhere (so bad my leg/legs would give out sometimes), really and joint pains whenever it got colder, my jaw started clicking if i opened my mouth (and jaw pains). and yeah, nineteen is really young for fibromyalgia, since it’s usually a condition you develop in your forties, but i was just lucky like that i guess /jk

i went online to google my symptoms and came across fibromyalgia, so what i did next what read up on it and found a checklist of the main pain spots that are used to achieve a diagnosis:

i believe you must check at least 5-8 of these tender spots, and again, with my luck, i checked all of them. a rheumatologist will press on these points during a physical and you’ll let them know which hurt and how much (or they’ll see you flinching from the pain too lol)

for a diagnosis, they will give you mane test to get done first. we don’t know what causes fibro nor do we have a cure, so the way they do it is by ruling out every other possibility and by checking the tender spots.

it’s tough, it takes a while, and truly if you get a diagnosis they’ll prescribe some anti depressants (which i was already on at the time) and besides that? not much. you have to learn how to handle your own pain and what helps or doesn’t (like hot water bottles or hot showers or a change in diet to help with inflammation)

i’ve been diagnosed for about five years and still struggle. that doesn’t really go away… so i just learned how to manage as best as i could and learned things to avoid.

ALSO! it’s important to note that fibro and depression go hand in hand in most cases! in my case, i’ve been on antidepressants since i was eight years old, so the fibro came after… but in lots of cases, if you do have fibro, it’s more than likely that depression and anxiety will follow. sadly. so a psychiatrist is important to help manage and to prescribe drugs that can help both the physical and the mental.

here are a few other symptoms that i have saved on my photos:

the checked ones on the second are from when i was figuring out whether i had it or not

does that answer your questions? let me know if you have any others! i’m sorry you’re going through this ♡

#✉️ love letters #anon ♡#fibromyalgia

0 notes

send-noodles-not-nudes · 1 year

Text

So I accidentally committed a war crime today

My brother has friends over from our dnd group and I am absolutely gonna catch hell for this later and I genuinely feel horrible

But the TL;DR moment here is that one of said friends used the bathroom like two minutes after I took a massive shit and it didn’t have time to uh. Air out.

And in this house, we talk about poop (digestive issues gang wya), so if you don’t wanna know why it was a war crime, stop reading now.

It’s not graphic but it’s gross, and if you don’t have digestive issues, you might not be used to poop talk, so viewer discretion is advised

I have something called EPI (exocrine pancreatic insufficiency), which basically means that I don’t digest my food when I eat. Were it not for the miracles of modern medicine, I would be doomed to die a slow and painful death from malnutrition (assuming I didn’t get myself killed in another way first, anyway; EPI is just one in a long list of issues I have). Thank everything for digestive enzymes.

If you’ve never experienced digestive issues, I pray you never will. If you have them, I’m deeply sorry. Only about three (out of eleven) of my body systems actually function the way they’re supposed to, and while mental health and fibro are the biggest bitches in my life, EPI is the one that ruins my day the easiest. I did not understand the importance of a fully-functioning digestive system until mine quit functioning.

The things I’ve seen.

My word, the things I’ve seen.

You really do not want to know.

Believe me when I say that you have no idea how gigantic of a blessing taking a normal shit is until it stops happening in your life. Prior to diagnosis, I was pretty constantly having feast or famine (aka constipation or unholy diarrhea) when it came to my shit, on top of consistent bloating and nausea. I also started vomiting like once a month, then once a week, then basically every other day until I got my meds. When my mom started going through the beginning stages of her EPI, I was genuinely concerned that she would die because she’s diabetic and constant shitting and vomiting means you can’t control your blood sugar very well.

I’m not kidding when I say EPI can kill you. It’s like dysentery, but slower, and it’s not a germ that’s at fault. It’s your stupid fucking pancreas. I hate my pancreas. He’s a little bitch.

Anyways, I’ve finally gotten mostly back to normal now that I have treatment for my EPI, but there are still some things that are… sketchy.

My poop is finally solid again (which was never something I thought I would be genuinely happy about???), but it’s not as regular as before my digestive woes. I go less frequently with more mass.

I think it spends more time in my gut than it used to because my body needs all the extra help digesting food, so it has more time to fester and get stinky.

It’s not usually awful, but you definitely wanna wait five or so minutes before walking into the same bathroom. My friend waited like a minute and a half. It was like a whole pound of poop. Not a pleasant smell.

I am so sorry for the atrocities my body has committed against humanity. May your nostrils rest in peace, friend.

#digestive issues #digestive woes #funny in a gross way #I have committed war crimes #epi #exocrine pancreatic insufficiency #normalize talking about the gross parts of your body #everybody poops #my illness may be invisible but I don’t think the smell was #seriously I think I saw green stench lines coming from it #count your blessings that your guts work right y’all #digestive gang

1 note · View note

thebibliosphere · 2 years

Note

Hey joy! I saw you were answering asks, I hope you have a nice day, and if you have spoons, I was wondering if you had any tips for pushing doctors to look further/at an alternative diagnosis? Specifically hEDS? I was diagnosed with fibro offically, but I have additional symptoms that have made me seriously think hEDS is actually the answer, but I feel like my health organization as a whole seems pretty content just throwing new meds at me and hoping I’ll go away every time I try to make some more progress.

I super appreciate your time, as a chronically ill teenager with no parent willing to advocate and no idea how to talk to doctors turned to a chronically ill adult with no advocate and no idea how to talk to doctors, you have been essential in me getting as far as I have already in this journey and I just wanted to say thank you. following you has given me words to empower myself and it has helped! So much! I can actually sleep with the med combo I have!

Hey friend, thank you for the kind words 💖

When it comes to seeking out an hEDS/HSD (hypermobile spectrum disorder) it can be really hard to find qualified doctors who know what they’re doing. One thing that might make it easier for you is finding an EDS knowledgeable physician listed on the EDS society global list of doctors: https://www.ehlers-danlos.com/healthcare-professionals-directory/

If you can’t find anyone in your area, one thing I’ve found helpful is to seek out physical therapy, as physical therapists are usually better able to spot hypermobile joints better than say, rheumatologists, who while often good with spotting autoimmune issues, are not as familiar with joint and muscle issues as they like to think they are.

(Several of my PTs have voiced at this point that if rheumatologists are going to be responsible for diagnosing joint and muscle disorders, they should be required to do several years doing hands on physical therapy with a broad spectrum of patients before qualifying, and I am inclined to agree with them.)

The PT may in turn know someone in your area who knows how to spot and diagnose connective tissue disorders like hEDS.

I hope some of that is helpful!

#chronic health tag

166 notes · View notes

thatdiabolicalfeminist · 3 years

Note

I suspect I have ME/CFS but I'm not clinically diagnosed, and idk how I would even get diagnosed, but do you have any tips for beds or comfort? Do you have any comfort tips for someone who doesn't want to be in bed but fatigues early/easily?

So it's actually pretty important to figure out whether what you're ill with is actually ME/CFS or an illness with similar symptoms. Things that are good for ME patients can make people with similar chronic illnesses worse, and vice versa, and if you have something different to ME (or in addition to it) it may require medical treatment, either to make you feel better or to stop or slow serious damage.

If you have access to a rheumatologist, they should be able to run tests that can rule out lupus and rheumatoid arthritis, and they may be able to evaluate you for fibromyalgia as well. They'd likely run panels to check your blood counts and rule out vitamin deficiencies that can cause things from fatigue to neurological damage.

These are good things to do even if you're 100% sure you have M.E., because some of this stuff is commonly comorbid. (Oh, and if you have M.E. you might wanna get checked out for the most common comorbidities, like POTS or fibro or hEDS or IBS, to see if you can limit the strain your body's experiencing. Treat any comorbid migraines, etc.)

Check out the international consensus criteria to verify for yourself if you have M.E. Your GP may be willing to diagnose you if that's something you need or want to pursue - my original diagnosis was from a family doctor. A rheumatologist is better though, because they'll understand autoimmune stuff and know what to rule out. My rheumatologist caught ME symptoms I hadn't even noticed before.

In general though, being an ME patient means doing a lot of your own research. Doctors frequently know very little and only some are willing to read up on it. Don't let anyone try to sell you on graded exercise therapy - research shows it makes ME patients sicker, but some doctors recommend it anyway since it's good for many illnesses with similar symptoms.

As for what you actually asked about -

I think what you need/want as far as comfortable beds etc is going to be very specific to your particular body.

My main advice is to pay attention and not let yourself dissociate from your body.

People with chronic pain and fatigue often ignore our own bodies most of the time to avoid feeling that pain and fatigue so much, and it means we can have a hard time knowing what helps or hurts.

Experiment and be deliberate about noticing what feels restful and what doesn't.

In bed, you might find that you want extra pillows to support different parts of your body - a knee pillow makes a huge difference for me, and a body pillow under the edge of my back when I lie on my side.

Outside of bed, sit often and sit comfortably. As much as possible. I have found that it's WAY more draining to let my legs dangle down than to pull them up and cross them, so I sit cross legged a lot. I also have a day bed in the dining area so I can lie down when I get tired without missing out on socializing, or without leaving the room when I'm cooking. I've found that a chair with a back is less tiring than a chair without one. I also have a wheeled stool in the kitchen so I can cook sitting down and move around the kitchen without walking. It’s a lifesaver.

If you're not already using a mobility aid, consider getting one. I tire way, way less quickly with my rollator than I do with my cane, and I tire way less quickly with the cane than I do walking unsupported. (Also, some rollators and even some canes have convenient sitting when you're out and about!)

A cheap hand-propelled wheelchair doesn't save me energy unless someone else can push, but fancier ones are much easier to move, and motorized ones are least draining of all.

But honestly a $10 cane can be a lifesaver all on its own, even if you only use it on big fatigue days or when no one else is around.

Pay attention to whether light or sound tires you out, and if it does, try to reduce light and sound in the area where you rest. Same with other sensory input that can be quietly fatiguing. You may want to limit this input even outside of rest, so you don't wear out as fast. Lastly, if you're pretty sure you do have M.E., read up on pacing. My rheumatologist gave me this very easy to understand, nicely packaged guide to pacing, complete with charts to help you keep track of your activity patterns and explanations for friends and family so they can understand enough to be supportive.

Pacing is the number one best thing you can do to protect your health if you have M.E. The less often you go into post exertional malaise, the more ability you will retain.

Sorry this is so long but I hope it helps!

#myalgic encephalomyelitis #me cfs #thatdiabolicalfeminist #long covid #chronic fatigue syndrome #long post #asks #anon #anon asks

58 notes · View notes

disabled-dragoon · 2 years

Note

Hey! Probably will go to a doc and start the whole hospital journey again... I've been writing down all my symptoms to ask my doctor about possible things. Our symptoms seem similar. I have fibro and my docs tend to blame everything on it but there is something bad about my legs and motor functions that they can't explain. Blood test clean, MRI clean, CT clean... I plan to bring up the possibility of a few diseases that seem to fit. HSP, MSA-C seem to explain some symptoms, so I'll go with those. So, I wanted to ask... How did you get diagnosed with HSP? What shouldn't I forget to mention? Thank you so much, and I'm sorry if this ask is bothering you or too much, feel free to ignore if so! Have a great day!

Hi! No no this isn't bothering me at all, I'd love to help!

Unfortunately I got diagnosed when I was seven, so the actual diagnosis and process of it is a bit lost on me, my mother dealt with all that. But there are a couple of things I remember, and I've picked up a bit over the years that might help.

First of all, ask for genetic tests. They should ask about family history and all that because it's genetic and thus tends to be hereditary, but that's not necessarily always the case. Genetic tests will show if you're showing signs of/have the gene mutation that leads to HSP. Unfortunately this will probably include more blood tests, but if they go into it looking for a specific gene/mutation/comparing it to other genetic information then the results might be different.

That being said, have a look into family and genetic history if possible. It might help to have it on hand, I.e. to defend your symptoms under questioning if necessary.

Be prepared for more MRIs. They're not guaranteed, but I had a couple. They should focus around the areas of the brain and spinal cord, as HSP tends to affect things like the axons along the spine. They might come later.

Ask for a brain and spine exam.

Show up to the appointment with an overview of the conditions you think they should test for, especially HSP. The amount of doctors I've had that didn't know about it is shocking. And even if they do, it's good to have the evidence on hand to show why you've come to your conclusions. It's possible that things like HSP never even crossed their minds.

Make sure you've done a bit of research, however basic, into all forms of it before going into the appointment. This is a bit of an ask because HSP is a group of conditions that consists of around 80 different types, as well as complex and pure cases*, but it could be beneficial.

(*Pure spasticity means the condition is mainly confined to the lower limbs and lower mobility. Complex spasticity can include a few other symptoms like nerve damage and hearing loss etc. They can overlap, there are intersections, but make sure you look at both of them. I think I have mainly pure spasticity.)

I'm sorry if this wasn't much help but that's really the main gist of it. A diagnosis will be very much centered around your genetic and family history and is different for everyone, but if you do have it and they do the right testing then hopefully that'll give you a few answers!

And obviously the usual disclaimer that I'm not a doctor nor have I ever had medical training, this is personal experience and research.

I hope you get the answers you're looking for eventually!

#ask me anything #disability #disabled #actually disabled #disability awareness #disabilities #diagnosis #hereditary spastic paraplegia #hsp

11 notes · View notes

survivingfmandcfs · 3 years

Note

hey so i’m going to the doctor soon to see why i’m experiencing chronic pain and fatigue and a bunch of other symptoms that sounds exactly like fibromyalgia but i’m not sure since i am not diagnosed with anything yet. do you know what i should expect, and how i should prepare for the appointment? sorry i’m just worried and have had bad experiences with doctors in the past so i don’t want to be dismissed again

Hi Nonnie! I'm excited that you've got an appointment and you're working towards figuring out what's going on. That's awesome! Fibro is a tricky bugger and there's a lot involved in getting diagnosed, but some things you might expect to happen are:

A paper (or digital) questionnaire they'll ask you to fill out. This helps them narrow down your symptoms, pain levels, and areas of pain and gives them a better idea of what they're looking at.

A physical exam. This might be the tender-point exam that is no longer a criteria for fibro diagnosis but is often a helpful tool, or it might be a more general exam to check for any physical causes for your pain.

X-rays. Especially if you have significant joint pain, they might decide to do X-rays or other imaging to check for injuries, arthritis, or other joint damage.

Blood tests. These will be to rule out any other possible conditions, since there isn't a blood test for fibro. There might be a lot of them, so be prepared for that if you don't like blood/needles/etc. I think my record is like nine individual vials that they needed to fill.

Questions. Just. So many questions. A good doctor will sit down with you and go over your symptoms and health history very, very thoroughly, especially at the first appointment. You may be asked to describe symptoms in more detail than you've ever had to think about before. This is a good thing, and means that they're very serious about doing their job well and getting to the bottom of whatever is going on with your health. Answer their questions to the best of your ability and try not to stress too much about this.

I realize that's a lot! But you may not have all of that happen all at once when you go to this first appointment. Imaging and blood tests sometimes get scheduled for another time/day, and there will probably be one or more follow-up appointments to go over the test results before you get to the actual diagnosis bit. This is normal! A good doctor will take the time to get all the data so that they can give you an accurate diagnosis.

So, things you can do to prepare:

Make sure you have any records they've asked you to bring with you, or that those records get sent over from other doctors as necessary.

Bring your list of symptoms along, as well as a list of any medications you're on, including vitamins and supplements.

Also bring a notebook/extra paper for taking notes if you need to! Often, a lot happens during these appointments and you'll want to make sure you remember any instructions the doctor might give you.

If you can, a support person can make appointments easier. They can help you remember things, keep the order of events straight in your mind, and take notes if you're not able. They're also especially helpful if you have mobility issues. Just make sure it's someone you trust, who makes you feel more at ease.

Deep breaths. Try to assume that the doctor will be good unless proven otherwise. I know that's hard when you've had bad experiences in the past, but catastrophizing in your head before you've even met them won't do you any good either.

Ooh, also, if you have any questions to ask the doctor, bring a list of those too. Seriously, anything you're concerned about, write it all down and bring it along. Hopefully, all the questions you have will get covered without you having to ask. But this way, if they don't, you'll have the reminder and will be able to ask right away instead of remembering two hours after you get home and being disappointed that you forgot. You're also allowed to ask questions like, "Have you treated patients with this condition before?" if you're worried.

Okay that was kind of a lot. But hopefully it will help you have a bit more peace of mind about your upcoming appointment! I pray you get a good doctor who does their due diligence and that you get a diagnosis and treatment very soon, Nonnie! I'm wishing you many low-symptom days in the near future, my friend.

#ask #fibromyalgia #diagnosis #blood mention #needle mention

20 notes · View notes

doberbutts · 3 years

Note

Hi! Wondering if I can take you up on the offer in that dysautonomia post.

I’ve been feeling randomly more tired than it feels like I should, but I think it’s not general deconditioning? Showers can wipe me out for a few hours and a shower chair is helpful - but I can walk for miles and afaict even a 5 mile hike drained my mental energy before obvious physical exhaustion (noticeably worse executive function and sensory/emotional tolerance but only normal muscle fatigue). Medically, been trying to sort out high hgb/hct that isn’t going down that much with T dose, and also night sweats at least a few times a week, and also I can be lying down to nap with my heart rate over 100 and it only comes down slowly. Can’t freaking tell what’s ptsd triggers, what’s other stress/anxiety, what’s maybe autistic burnout/sensory management taking much more energy than I expect, what’s needing to eat more consistently, what might be sleep issues, what’s effects of hormone levels, or what might be something else. I’m waiting for a sleep study to try to rule out sleep issues. I would really appreciate any pointers if any of this sounds like it might point a particular direction or if other tests might be useful.

Sadly that could be a lot of things, and I definitely think a sleep study is a good way to start. Making sure to manage your food and water intake, fixing your sleep schedule, taking care to be kind to yourself during episodes, those are a good place to start. No, I'm not saying that that will completely fix your problems, but any doctor that knows about POTS that does end up diagnosing you [if you have it] will tell you to do these things anyway. This is why I have been slowly attempting to unfuck my life.

If all of these things don't seem to be helping and the sleep study reveals nothing, the next thing I'd do is buy a cheap blood pressure monitor and see if you can have an actual record of your heart rate and blood pressure before, during, and after these episodes if possible. Something that records the output, or take a photo of the readings so you can show them to your doctor. Personally being a child of diabetics I also recommend buying a cheap glucose test kit to see if your sugar levels are doing anything funky during these times as well. Try to keep a journal of time of day, what you were doing just prior, and the readings you're acquiring to see if someone can point out a pattern.

A really easy way to see if there's a cause for pushing for specific testing is to go from seated to standing at your usual pace. If you are an otherwise healthy person and your heart rate jumps more than 30 bpm there is a pretty good indication that something interesting is happening inside of you that shouldn't be. If you also notice a big spike or drop in your blood pressure when initially standing or after standing still for a long period, that's another clue.

If you unfuck these areas of your life AND are getting concerning readings with little to no improvement on symptoms, it's time to look deeper. Most cardiologists will do a 24hr holtor, an EKG, a tilt table test, and/or a stress test, though the tilt table test is the one that really tends to seal the deal. However with some of your symptoms, I would honestly not be surprised to hear your doctors wanting the sleep study and probably an EEG to rule out things like sleep disorders or epilepsy as there can be some overlap.

It does take the average patient 8 years for a diagnosis- it took me less the first time around because of my family history, but the second time around took more like a year and a half due to comorbidities and I literally almost died. A friend of mine got really jerked around by her doctors for close to 6 months before someone was willing to run a tilt table test and almost instantly diagnosed her the second she fainted during the test. Another friend was told she was being a ridiculous germaphobe while her doctor ordered the test despite having a known dx of something commonly associated with POTS and again she was still diagnosed almost instantly during her tilt table. A third friend keeps getting 'hmm maybe' 'no' 'totally healthyl 'yes?' 'okay well that's weird' when he asks for a tilt table and they refused to give it to him despite picking up arrhythmias during his holtor and EKG- it's been a year and he's still arguing with the doctors to get a tilt table. Unfortunately many doctors simply aren't trained in autonomic disorders or in autoimmune disorders, and POTS is both. It can be very difficult to find someone willing to listen to you.

If you do all of these things and land on 🤷‍♂️, a lot of times it's things like fibro or MS, and the knowledge gained from these tests will help find a diagnosis of whatever-it-is affecting you.

6 notes · View notes

lifewithchronicpain-original · 4 years

Note

how should you tell your doctor that you think you have something and have them actually take you seriously and not blame it on your anxiety or depression, like I know what depression and anxiety does to my body and this is not it, I definitely have fibromyalgia and it makes it worse for sure diagnosis bc it can't be seen in the blood, how do I get her to even consider the possibility of fibromyalgia??

Fibromyalgia is actually well known to occurr in higher rates for people with depression. The connection? No idea, but they are definitely comorbid.

In my experience, doctors take you more seriously the more documents you have. Notebooks on pain levels and symptoms, and any other handy medical documents. In my experience, Doctors like that A lot. And it helps to have a notebook to craft questions beforehand so you don’t forget. Doctors tend to feel you’re more serious about your health if you do organized things like that.

Also in my experience it’s really going to depend on the doctor. Some times direct is best, but maybe asking about a few similar conditions and their opinion to see if they land where you already are is one way to get the conversation started.

Doctors are more receptive to language that doesn’t make you seem certain. “I think I might have it, how can we be sure I do or don’t?” As opposed to going for the direct “I have done research and I believe this is it” especially depending on your individual relationship.

At the end of the day, if your doc won’t listen, it’s totally okay to find one who will. You’re not beholden to whoever you have now from the roulette wheel of doctors. If you are female or black, it may be advantageous to request a doctor who is too. Black and female pain is constantly discounted.

I have a male pain doctor but my pcp, psych, and gynecologist Have to be female because there are certain things that are just easier to talk about my health that way. It’s like that for many people and it’s our right to request. Although it’s not a gauarentee, it’s stacking the odds in your favor in one of the few ways you actually can.

Also fibromyalgia is a diagnosis of exclusion so if a doctor thinks it might be something else thats testable, you might want to try it. Negative testing can point the way to your fibro. It did for me. I thought I had either MS or Fibro, testing for MS showed it wasn’t. So at that point fibro became the only possible answer.

I feel like I’m forgetting something, but Its not coming and I don’t want to keep you waiting anymore. Followers, please add any thoughts!

#chronic pain #fibromyalgia #spoonies #chronic illness #disability #talking to doctors

116 notes · View notes

creek-cryptid-deluxe · 4 years

Text

Ok, so I am reaching out to the community for some insight and opinions.

Yesterday I went in for my second appointment with my new rheumatologist. First we went over my lab results. Blood work shows nothing major (as usual) but my hand & hip xrays show signs of osteoarthritis & my neck xrays show that my muscles are so tense & tight that my neck no longer has any sort of curvature in it. That's right, my neck bones are entirely straight. He says this is probably a huge factor in my migraine level tension headaches.

On that note, he asks how well my baclofen (neuro suppressant muscle relaxer) works. I told him that due to a miscommunication between my prescribing doctor & the pharmacy, I was without it for 5 days, during which I had the same amount of joint instability but my legs were so stiff that I couldn't straighten them & my neck was so tight that I couldn't move my head & the "migraine" was constant & overwhelming, so I think they were pretty well considering it's a low dose. He seemed to understand.

Then he began talking about how ideally he would put me on anti inflammatory medication for the osteoarthritis & obvious joint inflammation, but won't because of my hatial hernia, as it could mess up my stomach. My view is that my stomach is already messed up & frankly I'm just trying to have as much functionality as possible on a day to day basis.

Then he brought up fibromyalgia as a possibility regarding my wide spread joint pain, tenderness at the joint, fatigue, & sleep disturbances. I gently interjected at this point bring up that every medical journal article I'd read about fibro said it was a diagnosis of exclusion (he nodded) & I went on to say that my solid, proven diagnosis of Ehlers-Danlos syndrome covers all those symptoms. He said that there's "a lot of overlap between fibro, osteoarthritis, & Ehlers-Danlos." Ok, yeah but if all my symptoms fall under Ehlers-Danlos & osteoarthritis, that disproves fibro as it's a clinical diagnosis of exclusion. As in, there is no other explanation for the symptoms.

He continued to push the fibro narrative & has me trying cymbalta. Ok. Fine. I'll try it again, see if it works this time. Symptom relief is symptom relief. He did make sure to let me know he isn't putting fibro in my chart. I make a 3 month follow up, and leave.

Then i get a call in my car. It's the doctor. He says he forgot to tell me that sometimes there is a reaction between cymbalta & baclofen called serotonin syndrome. That if the reaction occurs, he wants me to scale back my already low dose of baclofen.

Here is where i have a giant red flag appear. I explained that I wasn't comfortable scaling back my baclofen because it's the only thing keeping my muscles from being unusable & stiff. The doctor then said that if i keep taking it, my muscles will be too loose & I will have more instability & dislocations. I explained, again, that even when i was off of it for those 5 days that my instability & rate of dislocation stayed the same, but my muscles became unusable. I added in that if on the baclofen my neck muscles are so tight that they are altering the structure of the bones in my neck, imagine how much worse that will be without baclofen.

His response was to tell me that cymbalta will help with my muscle pain & i should just scale back the baclofen, then hung up, completely ignoring that muscle pain isn't the issue, stiffness is.

I have a few issues with this. #1. He is trying to alter a medication regimen that I've successfully used for 3 years while in care of a doctor that I've been seeing for at least that long WITHOUT consulting that doctor.

#2. He repeatedly contradicted himself within this one visit. On the med in question muscles are still so tight they are altering my bone placement, but on it my muscles are too loose causing more instability/dislocations? WHICH IS IT?

#3. He seems to be hyper focused on the answer being fibromyalgia. It's like he decided that's the answer & is trying to twist the facts to fit that. Which is distressing as I have an answer... Ehlers-Danlos syndrome & osteoarthritis.

I suspect that he knows with "just" the EDS & osteoarthritis diagnoses, that all there is for him to do is monitor & give my anti inflammatory medication (which he won't do), so to feel like he is useful and doing something has it stuck in his brain that I will have fibro, no matter what the actual findings are so that he can rx random fibro meds.

The whole thing has left me uncomfortable & honestly worried about continuing under his care. I'm going in to my general practitioner next Thursday to get her opinion & follow up about a med she wants me to try for my fatigue & idiopathic hypersomnia.

Anyone care to weigh in? Am i being ridiculous or am i being reasonable in my feeling that this whole thing is kinda sketchy & is going to end up doing more harm than good?

Help me Obi Wan, you're my only hope.

#vascular ehlers danlos syndrome #ehlers danlos problems #chronically ill #chronic illness #chronic pain #disability problems #disabilties #disabled #disability

15 notes · View notes

wlwdjh · 5 years

Note

hi. i think i might have some early fibromyalgia but the internet isn't helping me too much. how did you get a diagnosis? how did it feel for you in the beggining? please i need some help i have been struggling with health for a few years but lately its gotten worse and neither my mum (undergraduate in medicine) nor any doctors ive been to know whats going on. Ive been on antidepressants for a while but stopped them. i cant say they helped. do you have any experience you can share?

Hi hun. First I want to preface this by saying I am in no way a medical professional so all I can do is share my experience. I also am located in the United States and have health insurance, which is going to make my experience different than a lot of others. I’m gonna put the rest under a cut just in case anyone has trouble reading about medical issues.

Fibromyalgia is a weird diagnosis, in that it’s a diagnosis by elimination. Before I was diagnosed by a Rheumatologist (a doctor who specializes in diseases of the connective tissue like arthritis) I spent years working with my doctor to figure out the source of my chronic pain. At 19 I was in a car accident and my doctor checked me over and took x-rays, all of which came out completely normal. Slowly over the course of the next few years though my health started to deteriorate.

At first I thought it was only mental. I was having major anxiety, to the point where I couldn’t go to school, and depression severe enough that I couldn’t get out of bed. I was sent to a psychiatrist, who listened to my symptoms for 15 minutes, diagnosed me with a panic disorder, and prescribed me Fluoxetine (Prozac) and sent me on my way.

Here’s the thing with meds - they work, but it’s often a struggle to find the right one. A lesser known symptom of Fibromyalgia is medication sensitivity. While Prozac works wonders for millions of people, it was way to strong for me, and left me feeling like a zombie. So after a few months of this drug, I went back to the same doctor. He maintained his previous diagnosis but switched me to Buspirone, a medication that is used just for the treatment of anxiety. I definitely think that it helped, but it didn’t do anything for my depression or any of my other symptoms.

While I was trying to figure out my mental health I started having more severe chronic pain. I was a dancer from twelve to twenty, and was in the best shape of my life when I started having severe joint and muscle pain. I thought I was just pushing myself too hard honestly, and just tried to slow down on my classes. I went from dancing 8-12 hours a week to not at all.

I also was having issues with memory - I was losing gaps in the day and couldn’t focus on things I used to love like reading. I was also exhausted 24/7.

It’s around this time that I dropped my psychiatrist and went without medical intervention for about a year. I realized at 21 that my depression was getting worse and worse - that summer I spent an entire week in bed, and my best friend had to come and make sure I was eating. I started seeing an MFT, and going through my own journey to mental health.

When I finally (through tons of incredibly hard work) pulled myself out of that hole I stopped being emotionally stoic and started noticing hey, my body is getting worse. My IBS symptoms started around the age of 23, and I lost quite a bit of weight just by not being able to eat anything. I also, through the encouragement of my therapist, started going back to my primary care physician, and he started trying to puzzle it out with me. First we thought the symptoms were depression related, so he put me on Welbutrin (which I still take to this day). It was unlike the other drugs in that taking it actually gave me energy and cleared my mind, rather than fogging it up further. Then he sent me to Physical Therapy. The PT was horrified at the state of my back at this point and put me through 8 weeks of grueling therapy. I would leave in incredible pain every day and then have to go home and do more exercises. While it wasn’t pleasant I can say that it gave me some of the knowledge that I use now in trying to treat my Fibro.

I also went through an elimination diet to try to find my trigger food for my IBS. I had never before in my life shown signs of dairy intolerance and then here at the age of 23 I was developing a rash on my arm any time I tried to eat mac and cheese lol. Cutting that out of my diet made a big difference in my gut health.

This whole time I was doing lots and lots of internet research on my own. I remember coming across an article about Fibromyalgia and its symptoms and how my heart stopped when I read it. I took it with me to my next doctor’s appointment and he admitted that he didn’t know much about the disease but that he could refer me to the doctor who did. In the meantime he put me on Gabapentin for my pain (which just made me feel drunk and dizzy half the time, not my fav).

The first appointment with my Rheumatologist was terrifying. I kept thinking that all my symptoms were just caused by my depression, that I was faking, that here I was about to be laughed out of another doctor’s office as a liar and attention seeker. Instead my doctor sat me down, asked me about my mental illness, my family history, my lifestyle, my diet, how bad my pain was, where it was located, and never once suggested that any of my symptoms were in my head. I went home and cried that night - I had never felt more validated in my life.

Before I could get my diagnosis we had to run some tests. My Rheumatologist had access to all of my results from previous x-rays and tests but had to run some blood tests to rule out anything else. I also underwent a physical test where she checked for trigger points - they’re basically small points on your body that cause intense pain when pressed. Almost all of the points hurt me haha. After a few weeks, at 24, five years after my initial onset of symptoms I had my diagnosis. I was prescribed Cymbalta and told to stop eating gluten, start exercising more, and to take care of myself. That’s the hardest part of this condition for me - the only way to treat it is by living a healthy lifestyle, which is incredibly difficult to do on my own due to my mental health issues.

It’s been a journey for me, and I’m sorry to say that everyone I’ve talked to with Fibro has had a journey as well. It’s just not a condition that doctors are quick to diagnose patients with. I know it can be hard but self advocacy is going to be your best bet towards getting a diagnosis. Remember that even without one your pain is still real.

#asks

5 notes · View notes